Today though, she was talking about a nurse who reminded her of our friend Lisa, and said this: "I told the Lisa-like woman (and it's true) that my muscle spasms were like hot wires applied to my legs, and you can imagine how that feels; and she said 'Yes,' and I was grateful for the empathy. I'll have to remember that simile. It's an effective description."
With long pauses between phrases, sometimes, and in a very weak voice; but as you can see never losing her train of thought. Then she went to sleep.
She sleeps a lot, sometimes drifting off in the middle of a sentence. She may be getting a stronger dose of pain medication than she had in the nursing home, or it may be that her new wound is sapping her strength. (It's in her thigh near her groin. It wasn't there a month ago, and now it's deep enough that the doctor at the wound clinic could put his finger in far enough to feel her bone, and her femoral artery. So they kept her at the hospital.) They may increase the dose of muscle relaxant in her infusion pump, which delivers small doses of muscle relaxants and morphine directly to her spinal cord. That might mean they can lower the amount of oral painkillers.
As always, I don't know if I'm sitting at her death bed, if this is the beginning of another, lower plateau on the long descent, or if she will recover to the previous bleak plateau.
Meanwhile, her nursing home is blaming her computer equipment for tripping a circuit breaker last weekend. Since it's all DC equipment, powered by transformers that can hardly take more power than three 60-watt bulbs, that seems unlikely to me. The nursing home is also upset about her head-controlled mouse, which involves a camera that senses a 1/4-inch metallic dot glued to her glasses, and moves the cursor as she moves her head. "Photographic equipment" is not allowed, they say, because it violates patient privacy. And I must bring her no more DVDs, since they offend her roommate.
We've asked the hospital to inquire about other nursing homes, getting so far three refusals. I imagine that will be the pattern: Marsha's a Medicaid patient with multiple sclerosis, diabetes, really bad pressure sores, and probably a bone infection. It can't be profitable to have her as a patient. So we're likely stuck with her old nursing home.
I need to decide how hard to keep fighting to get them to turn her every two hours. Pressure sores happen to people who can't move because the circulation of the blood gets cut off from the parts you're lying on, and the tissue dies. Turning every two hours is the standardly cited remedy, so that no part has the circulation cut off for too long. I have no idea whether there are any institutions that actually do this. Certainly the nursing home didn't (saying Marsha refused to be turned) The hospital isn't turning her every two hours either – and if the hospital where the wound clinic is located doesn't turn her every two hours, why should a nursing home?
I am not good at this kind of struggle, at being a firebrand; and more and more I suspect that in fact no one actually wants sick old people with pressure sores to be turned properly (no one including, possibly, the sick old people); that the turn-every-two-hours rule is known by all never to happen; that those who cite it simply don't want it to be their fault that the turning doesn't happen. I don't exclude myself here; I don't know whether my growing reluctance to try to move mountains is a sensible acknowledgment of how low my reserves of energy are, or cowardice. Maybe there's not so much difference.
Later: I've talked to one of her doctors, who says that the wounds are not going to heal unless she gets a feeding tube installed in her stomach. (Draining wounds take away lots of protein.) But Marsha was reluctant. I've talked to her a little about it, and I think I can probably convince her to go ahead. I hope to heaven and hell I'm doing the right thing. We'll talk again in the morning.